Guest guest Posted December 18, 2000 Report Share Posted December 18, 2000 "What are you taking it for? Have you started on it already?" Hi Ling sweety *hugs* I have palatal myoclonus. Its a rare movement disorder, and everyone thinks its a result of neurosarcoidosis. I'm on many neuromeds and they are hoping that the Tegretol will help stop the seizure problems. I see the movement disorder specialists next month. For more info see http://www.ninds.nih.gov/health_and_medical/disorders/myoclonu_doc.htm and http://www.ninds.nih.gov/health_and_medical/disorders/opsomyo_doc.htm Love you hon, Asha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 Hey everybody, I am on to my next med. TEGRETOL, it's actually an anti-convulsant but like many other medications is also used for nerve pain. Is anybody on this or know about this? Thanks, ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Hello At last someone has mentioned a drug I recognise other than amytripylene (sp) that caused me so much water retention that I floated rather than walked. My GP perscribed Tegretol in doses of 100mg three times a day. It was a bugger is sent me to sleep from about 3pm to 5-30pm every afternoon and I couldn't afford to do that. Now he suggests I take it at night but I must admit I rarely do but do give it a go at night and see how you go it may very well help. Love Sue X The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: butterflypower@... Sent: Friday, November 30, 2001 10:58 PM Subject: [] Tegretol Hey everybody, I am on to my next med. TEGRETOL, it's actually an anti-convulsant but like many other medications is also used for nerve pain. Is anybody on this or know about this? Thanks, ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Foundation: http://www..org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2002 Report Share Posted May 10, 2002 In a message dated 05/09/2002 6:45:37 PM Eastern Daylight Time, writes: > Secondly, I am interested to know if anyone else has seen problems with > Tegratol and decreasing WBCs and neutrophils. Hi Barbie, My son, , is on 150 mg of Tegretol three times a day for seizures. He also takes 2 other seizure meds. We were also very concerned regarding the drop in white count (he is CONSTANTLY sick), but the neurologist waited until he was on his full dose for 2 weeks before running the labs (he is a VERY hard stick and we didn't want multiple blood draws). We agreed to call if he was bruising alot or if he was developing infections that were out of the ordinary for him or if antibiotics were not working for his typical infections. We had our labs drawn 4 weeks following the initiation of his Tegretol and, though the numbers were lower, they were not " too " low as to cause any immune complications (ie. neutropenia, low ANC, etc.) Now he just has his labs drawn every three month prior to his MRI's of his brain and he numbers are all right in the middle of normal (that is also when we draw his tegretol level to be sure we are still in the therapeutic range). The neurologist feels that most people will have a transient drop in their white count in the beginning, but as their body adjusts to the drug it will resume it's normal production. Hope that helped! Take Care and God Bless. Mommy to Annette 12 (Selective Antibody Deficiency-IGG 2 and 4, CP, Developmental Delay, g-tube, HIV+), 6 (Brain tumor survivor, severe hearing loss, chronic sinus and ear infections, asthma, seizure disorder, GERD) and Trayvon 3 (Ivemark Syndrome, severe congenital heart defects, asplenia, situs inversus) All wonderful!!!!! <A HREF= " http://www.caringbridge.com/ny/my2angels/ " >Click here: CaringBridge - my2angels</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2002 Report Share Posted May 10, 2002 Thanks for the info. We are going over a bridge we have not traveled before. We did drop into a pretty low level with his # of neutrophils only 1300 or % 29 but we have come up a bit. Lucas is on IVIG so the lows were prior to his 3 week infusion. BARBIE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2002 Report Share Posted May 11, 2002 , I visited your web site. Your children are just growing up and changing. Nettie looks wonderful as do the boys. We will keep you all in our prayers. Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2003 Report Share Posted December 25, 2003 In a message dated 12/25/03 11:30:45 PM Eastern Standard Time, markhogue2002@... writes: > i heard it wasn't too good,a dr. tried to get me on it but i heard about > all the bad side effects of it.i've taken tegretol for 31 + years all the > others seem to make me have more seizures. good luck,MARK HOGUE > What do you find the side effects of Tegretol to be? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 IN MAY EARLY YEARS TAKING TEGRETOL IT MADE ME GAIN WEIGHT BUT,I FIND IF YOU STAY ACTIVE YOU WILL STAY IN SHAPE.ALSO IT CAN MAKE YOU OFF BALANCED.NOW THAT I'M TAKING SUNRIDER HERBAL FOODS WITH MY TEGRETOL, I HAVEN'T HAD ANY SEIZURES IN 6 MONTHS NOW AND I WAS HAVING THEM SO BAD THIS YEAR I HAD NEARLY 700 SEIZURES IN 6 MONTHS TIME.SOMETHING ELSE DON'T LET YOUR CHILD HAVE GRAPEFRUIT OR GRAPEFRUIT JUICE BECAUSE THEY WILL LOWER THE LEVEL OF MEDICATION IN THE BODY. MARK HOGUE jbs8198@... wrote: In a message dated 12/25/03 11:30:45 PM Eastern Standard Time, markhogue2002@... writes: > i heard it wasn't too good,a dr. tried to get me on it but i heard about > all the bad side effects of it.i've taken tegretol for 31 + years all the > others seem to make me have more seizures. good luck,MARK HOGUE > What do you find the side effects of Tegretol to be? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2012 Report Share Posted March 25, 2012 Thank you so much for all this info. Tom is on 10,000 iu of D3. Presumably they'd have to increase that if he went on tegretol if it depletes it so much. I'm struggling with this a bit - obviously I want to stop having seizures but if feels a bit sledgehammer, especially when he'd have to stop everything else. How tegretol affect biomed I wonder. Seeing Dr Goyal (yes, DAN number 9) but not til June. Toms lovely teacher said on Friday at MAM " when he's feeling well he can do anything " . Slight exaggeration but sentiment is right. He still feels crap about half the time > > Tom's paed is suggesting Tegretol to control his seizures. He's only had two, four months apart. But he also suffers with headaches, anxiety etc. > > Does anyone have any experience with Tegretol, good or bad? I see it interacts with almost every other med he's ever taken - omeprazole, antihistamine, anti fungals, vitamin B.... > > Doc has also prescribed 10,000 iu of D3 a day. I thought 3,000 was a good dose so presumably this means he's very, very low in D3? > > Would welcome any thoughts. > > Many thanks > > Steph > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2012 Report Share Posted March 25, 2012 Thank you so much for all this info. Tom is on 10,000 iu of D3. Presumably they'd have to increase that if he went on tegretol if it depletes it so much. I'm struggling with this a bit - obviously I want to stop having seizures but if feels a bit sledgehammer, especially when he'd have to stop everything else. How tegretol affect biomed I wonder. Seeing Dr Goyal (yes, DAN number 9) but not til June. Toms lovely teacher said on Friday at MAM " when he's feeling well he can do anything " . Slight exaggeration but sentiment is right. He still feels crap about half the time > > Tom's paed is suggesting Tegretol to control his seizures. He's only had two, four months apart. But he also suffers with headaches, anxiety etc. > > Does anyone have any experience with Tegretol, good or bad? I see it interacts with almost every other med he's ever taken - omeprazole, antihistamine, anti fungals, vitamin B.... > > Doc has also prescribed 10,000 iu of D3 a day. I thought 3,000 was a good dose so presumably this means he's very, very low in D3? > > Would welcome any thoughts. > > Many thanks > > Steph > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2012 Report Share Posted March 25, 2012 Henry's been on it for 6 months. Although the manufacturer recommends base line blood testing and monitoring thereafter the NHS doesn't do this - it's even specifically recommended not to do routine blood tests in the current NICE guidelines. You need to watch out for a hole range of side effects - the manufacturer's webpages on Tegretol contain good information. I am going to check H's Vit D levels since the NHS won't be doing it.(That's not the only potential problem.) H is 12 and weighs 50kg is on 2x 200mg tablets a day for nocturnal focal (complex partial) seizures but he may be able to manage on less so Henry's dad and I want to try reducing it (co-ordinating with the epilepsy service) over Easter. Originally the neuro wnated H to build up to twice what he is now taking but his seizures seemed to stop completely very soon after starting it before we had built up to fuill odse and the hospital was happy for us not to go any further. Margaret > > > > Tom's paed is suggesting Tegretol to control his seizures. He's only had two, four months apart. But he also suffers with headaches, anxiety etc. > > > > Does anyone have any experience with Tegretol, good or bad? I see it interacts with almost every other med he's ever taken - omeprazole, antihistamine, anti fungals, vitamin B.... > > > > Doc has also prescribed 10,000 iu of D3 a day. I thought 3,000 was a good dose so presumably this means he's very, very low in D3? > > > > Would welcome any thoughts. > > > > Many thanks > > > > Steph > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2012 Report Share Posted March 25, 2012 Henry's been on it for 6 months. Although the manufacturer recommends base line blood testing and monitoring thereafter the NHS doesn't do this - it's even specifically recommended not to do routine blood tests in the current NICE guidelines. You need to watch out for a hole range of side effects - the manufacturer's webpages on Tegretol contain good information. I am going to check H's Vit D levels since the NHS won't be doing it.(That's not the only potential problem.) H is 12 and weighs 50kg is on 2x 200mg tablets a day for nocturnal focal (complex partial) seizures but he may be able to manage on less so Henry's dad and I want to try reducing it (co-ordinating with the epilepsy service) over Easter. Originally the neuro wnated H to build up to twice what he is now taking but his seizures seemed to stop completely very soon after starting it before we had built up to fuill odse and the hospital was happy for us not to go any further. Margaret > > > > Tom's paed is suggesting Tegretol to control his seizures. He's only had two, four months apart. But he also suffers with headaches, anxiety etc. > > > > Does anyone have any experience with Tegretol, good or bad? I see it interacts with almost every other med he's ever taken - omeprazole, antihistamine, anti fungals, vitamin B.... > > > > Doc has also prescribed 10,000 iu of D3 a day. I thought 3,000 was a good dose so presumably this means he's very, very low in D3? > > > > Would welcome any thoughts. > > > > Many thanks > > > > Steph > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2012 Report Share Posted March 29, 2012 About one a week at night, usually about an hour after falling asleep. It was only after he had a very bad tonic clonic (the night after a vomiting bug)we started the Tegretol. I don't think the NHS has measured his vitamin D levels so I shall be doing this. He wouldn't be able to have a SPECT scan without being unconscious for it - and we haven't been offered it, so I don't think it's an option. His MRI before Christmas was apparently okay. Margaret > > > > > > > > Tom's paed is suggesting Tegretol to control his seizures. He's only had two, four months apart. But he also suffers with headaches, anxiety etc. > > > > > > > > Does anyone have any experience with Tegretol, good or bad? I see it interacts with almost every other med he's ever taken - omeprazole, antihistamine, anti fungals, vitamin B.... > > > > > > > > Doc has also prescribed 10,000 iu of D3 a day. I thought 3,000 was a good dose so presumably this means he's very, very low in D3? > > > > > > > > Would welcome any thoughts. > > > > > > > > Many thanks > > > > > > > > Steph > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2012 Report Share Posted March 29, 2012 About one a week at night, usually about an hour after falling asleep. It was only after he had a very bad tonic clonic (the night after a vomiting bug)we started the Tegretol. I don't think the NHS has measured his vitamin D levels so I shall be doing this. He wouldn't be able to have a SPECT scan without being unconscious for it - and we haven't been offered it, so I don't think it's an option. His MRI before Christmas was apparently okay. Margaret > > > > > > > > Tom's paed is suggesting Tegretol to control his seizures. He's only had two, four months apart. But he also suffers with headaches, anxiety etc. > > > > > > > > Does anyone have any experience with Tegretol, good or bad? I see it interacts with almost every other med he's ever taken - omeprazole, antihistamine, anti fungals, vitamin B.... > > > > > > > > Doc has also prescribed 10,000 iu of D3 a day. I thought 3,000 was a good dose so presumably this means he's very, very low in D3? > > > > > > > > Would welcome any thoughts. > > > > > > > > Many thanks > > > > > > > > Steph > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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